RE: PLEASE HELP.NF 2 Surgery at C-2 soon--

[Guest guest]

here to tell you that I said it wrong. OPP;S It was my neice and sister not me that the surg. was on the c=2 area. Mine was on the front on the juggler vein and under the jaw. Sorry about that.

No I was not in the accident but Ive had my share and learned my lesson a long time back.

BEANS

PLEASE HELP.NF 2 Surgery at C-2 soon--

Hi everyone,

I'm scheduled to have surgery on C-2 in about a month. I hear the pain and muscle spasms post op are horrible. Also,

I hear there is a fair chance of developing breathing problems or having paralysis. Has anyone had this surgery? Could you tell me what to expect? Where was your tumor? Was it stuck to the cord or freely taking up space. I would be most appreciate of any info you could provide. Presently, I'm having terrible nightmares about the whole thing.

Thanks,

Sandy

-----Original Message-----From: L. Przybysz Sent: Thursday, November 07, 2002 2:05 PMTo: NF2_Crew Subject: Re: for those who have tinnitus

We have that in common then. It lead to my first MRI and NF2 diagnosis, too. I remember watching the "Little House on the Prairie" and when 's older sis (I forget her name...) went deaf they would have her "experience" being that she was living in silence and I thought that's what deafness would be like. For me, it's very weird how my eye movement is hooked into the tinnitus... and then the "volume" actually cranks up several notches when I close my eyes. Maybe that's why falling asleep was so hard at first! Hugs, Darmcy@... wrote: I hate to say this, but my husbands first symptom for NF2 was tennitus. Since his surgery on the first tumor, he still has it, worse than ever, and Dr.'s told him it's a learned behavior from the brain. There are devices you can "wear" that teaches your brain a new sound. Hard to imagine one can be deaf in the ear, and still have this unbearable ringing. :-(

[Guest guest]

Good luck with your surgery, Sandy! I'll keep you in my thoughts.

I don't think I've had a surgery like you're going in for, so I can't help

on the pain question. On a brain stem tumor removal, I did face the

risk to my breathing, and was even conscious for awhile with the breathing

tube in my throat (and when it was removed). It's hard sometimes

staying calm right after our surgeries, but the more we relax, the more

our bodies have a chance to heal--which is critical in those first days

especially. It's always been good for me to know the risks going

in because it takes away fears of unknowns, in a way, but it's not good

if we replace the fear of the unknown with fears of the "ifs." No

matter how things go, we surprise ourselves a lot, so be receptive to healing

and the positives, and see how things go. The Crew will be with you.

Hugs,

"J. Muirhead-Gould" wrote:

Hi

everyone,I'm

scheduled to have surgery on C-2 in about a month. I hear the pain

and muscle spasms post op are horrible. Also,

I hear there is a fair chance of developing breathing problems or having

paralysis. Has anyone had this surgery? Could you tell me what

to expect? Where was your tumor? Was it stuck to the cord or

freely taking up space. I would be most appreciate of any info you

could provide. Presently, I'm having terrible nightmares about the

whole thing.Thanks,Sandy

[Guest guest]

Thanks a lot, . That's great advice. Breathing tube while awake has always been a great fear of mine--having the breathing tube in when you wake up. I think I would gag! How was it for you?

You helped me,

Sandy

-----Original Message-----From: L. Przybysz Sent: Thursday, November 07, 2002 3:28 PMTo: NF2_Crew Subject: Re: PLEASE HELP.NF 2 Surgery at C-2 soon--Good luck with your surgery, Sandy! I'll keep you in my thoughts. I don't think I've had a surgery like you're going in for, so I can't help on the pain question. On a brain stem tumor removal, I did face the risk to my breathing, and was even conscious for awhile with the breathing tube in my throat (and when it was removed). It's hard sometimes staying calm right after our surgeries, but the more we relax, the more our bodies have a chance to heal--which is critical in those first days especially. It's always been good for me to know the risks going in because it takes away fears of unknowns, in a way, but it's not good if we replace the fear of the unknown with fears of the "ifs." No matter how things go, we surprise ourselves a lot, so be receptive to healing and the positives, and see how things go. The Crew will be with you. Hugs, "J. Muirhead-Gould" wrote: Hi everyone,I'm scheduled to have surgery on C-2 in about a month. I hear the pain and muscle spasms post op are horrible. Also, I hear there is a fair chance of developing breathing problems or having paralysis. Has anyone had this surgery? Could you tell me what to expect? Where was your tumor? Was it stuck to the cord or freely taking up space. I would be most appreciate of any info you could provide. Presently, I'm having terrible nightmares about the whole thing.Thanks,Sandy

[Guest guest]

Just curious, , what did you learn? I'm sure we would al benefit from any lessons.

Ttul, and thanks,

Sandy

-----Original Message-----From: Sent: Thursday, November 07, 2002 3:12 PMTo: NF2_Crew Subject: Re: PLEASE HELP.NF 2 Surgery at C-2 soon--

here to tell you that I said it wrong. OPP;S It was my neice and sister not me that the surg. was on the c=2 area. Mine was on the front on the juggler vein and under the jaw. Sorry about that.

No I was not in the accident but Ive had my share and learned my lesson a long time back.

BEANS

PLEASE HELP.NF 2 Surgery at C-2 soon--

Hi everyone,

I'm scheduled to have surgery on C-2 in about a month. I hear the pain and muscle spasms post op are horrible. Also,

I hear there is a fair chance of developing breathing problems or having paralysis. Has anyone had this surgery? Could you tell me what to expect? Where was your tumor? Was it stuck to the cord or freely taking up space. I would be most appreciate of any info you could provide. Presently, I'm having terrible nightmares about the whole thing.

Thanks,

Sandy

-----Original Message-----From: L. Przybysz Sent: Thursday, November 07, 2002 2:05 PMTo: NF2_Crew Subject: Re: for those who have tinnitus

We have that in common then. It lead to my first MRI and NF2 diagnosis, too. I remember watching the "Little House on the Prairie" and when 's older sis (I forget her name...) went deaf they would have her "experience" being that she was living in silence and I thought that's what deafness would be like. For me, it's very weird how my eye movement is hooked into the tinnitus... and then the "volume" actually cranks up several notches when I close my eyes. Maybe that's why falling asleep was so hard at first! Hugs, Darmcy@... wrote: I hate to say this, but my husbands first symptom for NF2 was tennitus. Since his surgery on the first tumor, he still has it, worse than ever, and Dr.'s told him it's a learned behavior from the brain. There are devices you can "wear" that teaches your brain a new sound. Hard to imagine one can be deaf in the ear, and still have this unbearable ringing. :-(

[Guest guest]

Dear ,

You, as a human being with experince, told me muchmore than the drs. Don't

get me wrong, they are thogouh, but don't have first hand experince as a

PATIENT, like yu did with yur wife. Did yu wife ave any long term

defienciens or effects? Your message is consoling--thanks much.

Sandy

Re: for those who have tinnitus

We have that in common then. It lead to my first MRI and NF2 diagnosis,

too. I remember watching the " Little House on the Prairie " and when 's

older sis (I forget her name...) went deaf they would have her " experience "

being that she was living in silence and I thought that's what deafness

would be like. For me, it's very weird how my eye movement is hooked into

the tinnitus... and then the " volume " actually cranks up several notches

when I close my eyes. Maybe that's why falling asleep was so hard at first!

Hugs,

Darmcy@... wrote:

I hate to say this, but my husbands first symptom for NF2 was tennitus.

Since his surgery on the first tumor, he still has it, worse than ever, and

Dr.'s told him it's a learned behavior from the brain. There are devices

you can " wear " that teaches your brain a new sound. Hard to imagine one can

be deaf in the ear, and still have this unbearable ringing. :-(

[Guest guest]

Hi ,

Cleveland Clinic. The whole thing makes me sick. I from Canton, Ohio. Have you had surgery for NF?

Thanks, and blessings to you too,

Sandy

-----Original Message-----From: & Larry Orr Sent: Thursday, November 07, 2002 3:01 PMTo: NF2_Crew Subject: Re: PLEASE HELP.NF 2 Surgery at C-2 soon--

Hi Sandy,

Where will your surgery be done?

I'll keep you in my prayers.

Many Blessings,

O. in Ohio ~~<><~~

PLEASE HELP.NF 2 Surgery at C-2 soon--

Hi everyone,

I'm scheduled to have surgery on C-2 in about a month. I hear the pain and muscle spasms post op are horrible. Also,

I hear there is a fair chance of developing breathing problems or having paralysis. Has anyone had this surgery? Could you tell me what to expect? Where was your tumor? Was it stuck to the cord or freely taking up space. I would be most appreciate of any info you could provide. Presently, I'm having terrible nightmares about the whole thing.

Thanks,

Sandy

[Guest guest]

I know hospitals and doctors are different. I haven't had spinal surgery, but when I had my AN out I was in ICU and under meds for 2 days. By the time I was alert I had very minimual pain.

Prayers are with you Sandy.

Carol

[Guest guest]

Hi Sandy,

I am the 2nd generation of NF2. Thus far there are three generations of it that we know of. My mother has it. Along with 2 of my 4 sisters. Both of my sister, Becky's kids have it. So far, on of my sister, Carolyn's three kids have it. We have only tested our oldest child with an MRI and it was clear. We have not tested our yougest one yet. She does have a cafe au lait spot. But this family is not ready for Pandora's Box to be open.

I was diagnosed in 2000. I had my AN removed at House Ear in LA in August. They were able to preserve my hearing a facial nerve. It was not a complete resection (or I would have lost my facial nerve) so it is slowly growing back.

Then in Sept of 2000 my meningioma doubled in size and caused sudden pressure on my eye nerves. I developed a severe cases of pappilladema. They put me on a LOT of steroids and out to LA we went again. It was removed and they had to put a shunt in my lumbar to drain the fluid off the brain.

Then in June of 2001, I had my other AN removed. It was a COMPLETE removal. It was also done at LA.

There are some on the crew I am sure who have had c-spine surgeries. So far my family has been spared the spinal surgeries.

I don't remeber what sort of pain killers they gave me after the surgeries. I do know it was not Darvaset and I was not on them for long. The only surgery that was painful was the shunt. It was so hard to get comfortable.

After each surgery they have you up and moving around soon.

I am lucky that I only get head pangs and sinus headaches. I get a lot of tinnitus. I feel sorry for those who live in pain.

I do take two different types of meds for seizures.

Blessings,

PS Did you enjoy the hail storm last night? We had all settled down for a movie and milkshakes and the thunderstorm started. Then everything got loud and marble sized hail was hitting every window. We grabbed some blankets and headed to the basement. Thank goodness we were spared. Outside everything was coated with ice and the roads were covered with leaves.

RE: PLEASE HELP.NF 2 Surgery at C-2 soon--

Hi ,

Wow, how are you today? Where were your surgeries done? Know anyone who has had a C-2 surgery to remove a tumor?

Did you have morphine after surgery? How did you feel. My mom has an AN.

Thanks,

Sandy